Surgery in T-Minus 5 Weeks

I’m not exactly sure what it is about me, but I just have not been able to bring myself to write this update.  It’s almost like a subconscious rebellion…  We’ve known this day would come since we were in the NICU in Ohio…  We thought it would come last year… And yet, the fact that it is finally time for the MOST major surgery/medical procedure in a series of major medical procedures is just a bit surreal.  

As of this moment, May 7th is Go Day.  

Just a dude and his dog :)

This post will be pretty factual as I am still processing a lot of my own emotions.  At the same time, I am humbled and thankful to my core for the army of people who have and continue to love and pray for Nathan and our family.  There is only one path ahead for my son, for my heart, for our family.   In light of that, we want to share and ask for your prayers.

On May 7th, Nay will have a RED device installed into/onto his face. 

RED stands for Rigid External Distraction - You can click here to get a bunch of images to see what the RED Device being installed will mean….  (This is just a link to the Google images that come up when you search “Craniofacial RED Device”).  

FAQ’s

1. Why does Nathan have to have the RED device?

• Apert Syndrome affects the way that bones grow in a person’s body.  The bones in Nathan’s mid face do not grow at a typical rate.  Most obviously,  this has an impact on his appearance.  The real problem is that without this intervention, he will be unable to get the oxygen his brain and body needs.  Oxygen is non-negotiable.  

• If we didn’t HAVE to, we wouldn’t.  This is not about changing the way he looks (though it will), or trying to "normalize" his appearance. Spoiler Alert: He will still have Apert Sydrome ;). The RED device is all about brain health and oxygen intake for the rest of his life. The RED device is an unavoidable part of caring for the body he has.

2. How does it work?

• The RED device is screwed into Nathan's skull on the sides with a bar that comes down the middle to allow it to be attached to bones in his midface.  Every day for about 4 weeks, we will crank the device and by doing so, we will physically pull the bones in his face out.  Eating and sleeping will be affected dramatically during this time.   

• After pulling out his mid face, the RED device stays on for another 4 weeks to allow the bones to heal and fuse in their new spot.

3. What’s the timeline?

• May 6th = Pre-op

• May 7th = RED Device Surgery

• Hospital = About 4 days after surgery

• In total, Dr. Fearon anticipates Nathan will have the device on for 7-9 weeks before undergoing another surgery to have it removed.

4. Will it change his appearance?

• Yes.

• 35 days left to enjoy the nuances of this little face I just love.

• The mid face bones will be overcorrected in anticipation of his mature, adult facial structure and oxygen needs.  So, he will have several years ahead of “growing into his face.”  

5. How are you all feeling about it?

• Gut wrenched.

• Nathan asked if he would die if he fell while he was “wearing that thing on my face.”

• Maddie and Bryce have already asked about missing school and how they will get to see Nay while he’s in the hospital.

6. How can we pray?

• For Nathan’s heart and mind as he anticipates and then walks through this physically and emotionally difficult procedure.  We are praying for real, personal, intimate interactions between him and the Lord that shape him in deep ways.  We pray that his little identity is formed by the Lord’s love and nearness.

• Insurance - always.  It’s too complicated to get into on a blog, but if you’ve walked with our family for a while, you know it’s always complicated when working with a doctor who is is out of network with everyone, willing to make single-case agreements, and all the insurance bureaucracy. Dr. Fearon has been the quarter back of Nay's care since November of 2013, he has the most experience in the world with Apert Syndrome, and it is our desire that Nathan continue to be followed and treated by him for this and future surgeries.

• For Jonny and I to press hard into the Lord individually and together. Pray for our hearts to be willing to accept whatever He allows.

I'll end with two scriptures hanging on the walls of our home. They bookend our living area so that I can never walk out to face a day, whatever it may hold, without first being held by the deep and lasting truths about who my God is.

"But this I call to mind, and therefore I have hope. The steadfast love of the Lord never ceases, His mercies never come to an end; they are new every morning,

great is your faithfulness."

- Lamentations 3: 21-23

"And if not, He is still good."

- Daniel 3:18

Pic of my "Sons of Thunder" 
as evidence that they DO love each other.